Thursday, February 13, 2020

The Worse Thing About Lipedema

Looks like a good book, Swollen, Bloated and Puffy....welcome to my world....

I wonder about the mental effects of this on those with severe Lipedema. The more you do, the more you bloat. The world offers the advice to the severely overweight person that they should always "move" as much as possible. For someone, with Lipedema, this means swelling like crazy even if your legs are wrapped, the fluid comes on. My life I have realized is spent between "doing things" and "crashing and burning". Life is a contest with the chronic fatigue and more on the scene.

Yesterday I told husband we have to get to the gym more, so I went to the gym, and grocery shopping. I was at the gym Monday too but wanted to get to the gym, the second time early on Wednesday, because I knew some housebound days from cold were coming. By the end of the day, I threw some rotisserie chicken in the oven to reheat it and ate green beans and small portion of noodles with it [half a cup], I was limping around. I felt huge, my legs hurt like hell. This is my life. Even walking to the bathroom felt like hell on earth. It snowed while we were there, and I had the nightmare too of inching along outside to make sure I did not fall, which means the paramedics would have to show up especially being trapped outside in the snow. I did not fall thankfully.

People don't realize this about me, but I fear weight gain all the time even at this huge weight. Food and activity are adjusted all the time NOT to gain weight and for the sake of the diabetes The doctors won't hospitalize me for weight loss, everyone here knows I've asked for years. Food seems to be a constant pain in the ass and expense where I wish I could afford better food, and it's occurred to me that some meals I used to make all the time like homemade vegetable soup, seem more and more out of reach financially. We ate these two salads from Walmart during the week for lunch where we split them in half. I will spend hours in the kitchen to make a chicken biriyani meal with peppers, tomatoes, vegetables and rice with boneless skinless chicken, later, these kind of foods make my blood sugars lower, but it's like being a chef chained to the oven.

 At this point, I think well I made it to 50, I was written off as dead at age 30 so maybe that was an achievement. I weighed almost 700lbs and bought 20 more years of life. I can't beat myself up anymore over the weight, though I know I have to make sure I don't gain. My body, My enemy, what would it feel like to have a body that had been nicer to me? If there is reincarnation, I want born into a thin body where I get to eat 2-3 meals a day, I enjoy and where hunger is normal, and where fat and food are processed normally. I want to enjoy life, not living in a monster body.

My body did oddly grow thinner on top from all the gym time. However I am losing height fast and have to go see a osteopath about this, the lower abdomen is a HUGE problem. It's like I am crunching down on myself. Years ago they told me I could have osteoporosis in my neck and other places. There's less height to spread the weight out over and the effects of aging with severe obesity has not been very pleasant. I used to be 5 foot 11 and half. I am now 5 foot 7. It seems I am growing shorter. Some serious neck pain is becoming a major problem.

Yesterday I was watching 600lb life, and this one lady named "Joyce" was on there and she was telling Dr. Now, she gained weight from sitting up too long. I don't know if she has Lipedema or not, her legs appeared thin, but some people can get it in the upper body, she definitely had Lymphedema. Dr. Now called her a liar, and I thought "Well this takes the damn cake..." because I know if I had to sit up in a car for days, leg wrappings or not there definitely would be extreme weight gain. I can go to UU church, sit there for two hours and VISIBLY GROW. Inside this embarrasses me. A thin person gains 10lbs and worries about how people may view them differently, imagine my life where just sitting makes it happen. One fun fact, my face swells too and the upper body when I am very tired. I will be talking to the MLD about this, but my face swells up so much lately it scares me. My cheeks even bulge out from my CPAP mask where I can see them growing below my eyeballs.

Here's an interesting trivia about me, NONE OF THOSE TAGGING FACIAL RECOGNITION programs work on me. My face changes that much. I've never been tagged on Facebook in my life, and there's enough pictures of me on there.

There's a voice in my head always telling me I am "lazy". It occurred to me a thin person with chronic fatigue could lay in bed from all the tiredness and not feel this constant condemnation. I try to calm myself down, thinking, "Well you can only do what you can." The constant pain and bloating though is affecting my mind. There's times where I feel like my brain is checking out from my body. I am going through the motions of doing something, shutting down pain. I do not think it is a good development if your pain makes you feel like crying.

Why is just being alive full of pain? It's hard when you want to have some sort of "life" but everything you do brings a ton of pain with it. My body swells up so bad. I know if not for daily Flexitouch, I'd be dead. One positive note, I did get years and years of infections under control. In April I will be hitting a one year mark without a leg infection. Even hitting the 10 month mark without one is a pretty big damn deal after years and years spent dealing with the constant bouts of cellulitis. I got close to one two times but I was able to fight it off without antibiotics. That's a pretty big deal, because leg infections were such a damn problem, but it takes living like no one else. The "crash and burn" lifestyle, hours in bed, but exercise here and there, the wrapping, the leg machine, etc. I have the theory the sustained cardio even on the arm bicycle machine at the purple gym is moving some more lymph along. I do 20 minutes at a time. It's what I can handle. It took months to even get the lungs to cooperate but now on most days I am okay.

However the pain is growing worse with age. The walking around and doing things and visibly limping until I can get to my bed. My brain sometimes wants to scream inside from all the physical pain I have to deal with. I know it has affected my personality. I suppose once I lay down, the pain does go down, not everyone has that result and have pain 24-7 with no reprieve. Who do I have to talk to about this pain, who won't judge me? Lose weight will be their mantra, but then the body "gains weight" the more stuff I do.

Life with severe stage Lipedema sucks. I did end up leaving all the Lipedema message boards online, I couldn't take the constant diets advice, the constant exercise until you drop advice, the endless being told to "starve" myself with advice of functional anorexia I could not physically bear. I wrote posts complaining about the extreme diets and the advice on here. Some of those are being read a lot though not many are commenting. I have the feeling some other people are silently suffering too or left like I have.

I have hunger pain all the time, physical stomach growling, the whole 9 yards, but according to these people I am supposed to go 2 days without eating. I have to eat a certain way to even stave off anemia, where my blood cells decide to become teeny tiny. These people aren't in my body. Sometimes the constant hunger pain makes me want to punch a wall. I woke up this morning at 6 am feeling like I hadn't eaten in days. The blood sugar was 122.

There is always the message for the people with severe Lipedema, "you are not doing enough", and "nothing is ever good enough" and ignored I have noticed in the community is the sheer immensity of the pain. Everyone I know who has severe Lipedema lives life on the gauntlet, but there's little understanding for us. The majority have multiple scary autoimmune diseases too. The positivity culture has our pain and reality HIDDEN.

The involvement with the weight loss industry is so high, that the focus is all there and our pain is assumed to be from "laziness" and not "exercising enough". It does a number on people's minds. I know it is doing on on mine. Add in the pain and swelling and you have a recipe for constant misery.  This is one of the worse things about being fat too, always that assumption and judgement, that "you are not doing enough", and it's all your fault.
The Lipedema World Needs Fat Liberation

1 comment:

  1. The biggest hurdle for me was to realize that exercise and weight loss are almost completely disconnected. In the US, being a Calvinist country, excess weight is treated, like everything else, as a moral issue. So of course you must make penance, by exercising - did you know the treadmill was originally a moral punishment device?

    I myself never got past "overweight" as far as BMI went, but even I was in a situation where exercise would be uncomfortable, and I knew mere miles of walking would not work because I knew some pretty big people who walked for miles. Everyone's seen obese waitresses and we all know they exercise most than almost everyone.

    I had high BP too and my doctor, when I had access to one, was bugging me about it so I first tried the DASH diet, and that was not really doing it. Then I remembered the old "keto" diet my mom had tried in the mid-late 70s and not stayed with because soda, but I reflected on how the "keto" diet was essentially how I ate in college, fish or baked chicken or fish, and then green vegetables to make me feel good, and not much room left in there for starches and sugars. When I went from $3-odd an hour to $5, I could afford more fillers and sure enough, I gained weight.

    I knew I could do keto, because I'd done it fine in my college years, and I knew I could do it with staple foods and no need for those fancy-schmancy prepared "keto" foods. No Halo Top ice cream or any of that other gop they rave about over on r/keto, although r/keto's a good resource if you keep your bullshit filters up./

    I was spending 2 nights a week at my boss's house, surrounded by my boss's obese family and their obese eating ways. I was told I'm "practically a vegetarian" because I had asparagus or broccoli with the 8 oz. of fatty beef I stir-fried for my dinners.

    And I lost weight, to the tune of about a lb a week. That's 52 lbs in a year, if you keep it off. It's fine progress. I weighed myself 1X a week, and it was pretty consistent.

    I thought my food bills would go up too, but they did not. I was really not spending more than I was on my old high-starch diet. Also there's a mental clarity that comes from going off of a carbohydrate-based diet. I no longer have to write long shopping lists, or scribble little notes to remember numbers for 30 seconds while doing my work.